The Conversations We Wait Too Long to Have
By Lisa Pahl, LCSW, APHSW-C

“It feels impossible to make a decision about my dad’s care. We never talked about any of this.”
“My sister and I are constantly arguing about what’s best for our mom, and now it’s too late to ask her what she would want.”
“I just wish I knew what my mom would want us to do.”
As a hospice and emergency medicine social worker, I have sat beside hospital beds
where families were completely united because they knew exactly what their mom
wanted. I’ve also sat with families who loved each other deeply but spent days arguing
because no one knew.

One of the greatest gifts you can give the people who love you is the confidence
that they’re honoring your wishes.

I’ve watched family after family struggle with making healthcare decisions on behalf of someone
they love. Emotions run high in the face of a medical crisis. Siblings disagree. Adult children
interpret the same situation differently. People worry about making the wrong choice. Unless
they have had a clear conversation about it beforehand, many are hesitant to make decisions
based on quality-of-life rather than quantity-of-life, even when they believe that’s what their
person would want,
What’s especially heart-breaking is talking with these same family members after the death.
Grief is often accompanied by second-guessing and uncertainty. Grievers are left asking, “Did
we make the right decision? Did we do enough? Did we care for them in the way they would
have wanted?”

We often think planning ahead begins with paperwork. But long before documents
become important, conversations preserve something even more valuable: your
voice.

Years ago, I arrived at the home of a new hospice patient. I noticed a collection of bags from
McDonalds when I first walked into the home, but thought nothing of it.
I had the opportunity to talk privately with her daughter, Jessica, on the back patio while her
mother was sleeping.

Jessica was a young woman, in her twenties, taking incredible care of her mother, who had
complex medical needs. I explored with her how the family came to the decision to initiate
hospice services. She shared with me her mother’s cancer journey. How her mom was
diagnosed less than a year ago and that the cancer had progressed quickly. Jessica desperately
wanted her mom to keep trying every treatment. At the same time, she could see how tired and
sick her mom had become.
Jessica shared that one day when her mom was hospitalized yet again, she asked her mom a
very loving and important question, “Mom, what’s most important to you right now?”
Her mom smiled at her and said, “I just want to be home. I’m tired, honey. I just want to be home
with you, eating McDonalds and watching tv.”
Jessica shared with me, “I realized in that moment, that I had to stop thinking about what I want,
which was every last second with my mom, and start thinking about what she wanted. It’s not
easy and I have a lot of feelings about it. But I know I’m doing what she wants because she told
me what she wanted.
After that conversation, this young woman then had the confidence to advocate for her mother
in the hospital, letting them know that her mother wanted to come home. Multiple professionals
tried to sway her from the decision, suggesting treatments to try as well as placement options.
Jessica stayed firm and continued to advocate for her mother’s wishes. A hospice referral was
made and her mother came home the next day.
On a subsequent visit, when her mother later became too sick to communicate, Jessica shared
with me that she was so grateful to be able to fall back on her mother’s words, “I just want to be
home.” It gave her the confidence to keep caring for her at home even when it was difficult.
My own dad has always told me that he never wants a feeding tube. But he didn’t just say
that. He said, “You better believe I’ll haunt you if you put a feeding tube in me.”
My dad is a jokester, but he wasn’t really joking. I felt the weight of those words, and I
suspect I’ll remember them for the rest of my life.

It’s the conversations that give us the confidence to make healthcare decisions on behalf
of someone we care about.

After years of working in end-of-life care, I’ve noticed something important. The families who
have had conversations about healthcare decisions and future planning didn’t avoid heartbreak,
but the end-of-life experience was typically much more peaceful for all involved.

Having conversations about what matters most:

● Gives your family confidence. This may be the greatest gift of all. I’ve watched family
members make incredibly difficult decisions with more peace because they knew they
weren’t guessing. They were carrying out the wishes of someone they loved.

● Preserves your ability to make choices. While you still can, you have the opportunity
to share what matters most to you. Those conversations can continue to guide your
loved ones, even if there’s a time when you can no longer make decisions yourself.

● Honors your voice. A time may come when you can’t speak for yourself. Sharing your
wishes now helps ensure your voice is still part of the decisions that are made later.

● Reduces family conflict. When people understand your wishes, they’re less likely to
argue over what you would have wanted.

● Helps ensure your wishes are honored. The more your loved ones understand your
values, the more likely they are to make decisions that reflect what’s most important to
you.

● Eases fear and uncertainty. Even difficult conversations often reduce anxiety because
everyone has a clearer understanding of what lies ahead and what matters most.

● Creates meaningful conversations today. Talking about what matters at the end of life
often leads to conversations about what matters in life right now. Families frequently tell
me they learned things about one another they had never discussed before.

What we know about a dementia diagnosis is that someone else will eventually have to
speak on our behalf. That means that it’s especially important to have early, meaningful
conversations about what’s most important to us as well as specific conversations about
the type of care and treatment we want as the illness progresses.

If you’re already caring for someone living with dementia, you may be wishing these
conversations had happened earlier. Please know this: it’s never too late to ask about
what matters today. While some decisions may no longer be possible, many people living
with dementia can still tell us about what brings them comfort, who they trust, how they
want to spend their time, and what gives their life meaning.

The truth is that most people don’t avoid these conversations because they don’t
care. They avoid them because they don’t know how to begin.

The good news is that you don’t have to figure out how to start these conversations on
your own. Organizations like The Conversation Project and Compassion & Choices have
created excellent resources to help families talk through healthcare decisions and future
planning. The Dementia Deck, which I created, offers another approach using
multiple-choice questions and a conversational tone to make these discussions feel a little
less overwhelming.
Once you’ve talked about what matters, it’s important to put your wishes in writing by
completing an Advance Health Care Directive. An Advance Health Care Directive lets
your physician, family, and friends know your health care preferences, including the
types of special treatment you want or don’t want at the end of life. It also allows you
to name a healthcare decision maker, the person(s) who will be responsible for
making decisions on your behalf when you can no longer do so.
None of us knows exactly what the future holds. But we can make it easier on the
people we love by sharing what matters while we still can. One day, those
conversations may become the words they hold onto when they need them most.